UK National Archive releases formerly 'closed' file

On a positive note, it is interesting that in 1991/2 most people involved clearly thought of ME and CFS as two different conditions.

What changed this?

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One word answer: psychobabble.

The UK psychogenic people have consistently claimed ME and CFS are the same for a very long time. Repeat it often enough and people start accepting it. I have not read all of Wessely's and others comments in detail in the files, maybe something more can be found in some of the letters that might explain some of it.

There's a comment in the files in one of Wessely's letters where he objects to ME and CFS being listed separately. I've scanned through the whole of this file, and the abiding impression I get from it all is that a large amount of campaigning and lobbying and discussion goes on, and considerable progress is made in redrafting the guidelines, then Wessely and Professor Thomas come in at the end and wipe it all out.

On page 18, Wessely argues against "CFS/ME" being categorized as neurological:

As we, and now many other groups, have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause, then it [neurological categorization] will also itself contribute to disability and poor outcome.

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Okay, I guess I'm totally screwed now, by his reasoning ... but in the beginning, my first symptom (after a nasty flu), was calf pain when walking. Which I assumed was from being at home with the flu for a couple weeks. So I kept pushing myself, with the assumption that the muscle pain would stop once my muscles built up again. And the pain kept getting worse and other symptoms (PEM) became much more prominent. And that was long before I heard of ME or had any idea what was going on.

I also find it interesting how many absolute statements the psychs make. They almost never mention if something is even controversial - they simply state their view as if it is incontrovertible fact that has been proven over and over and cannot be doubted by any sane and rational person. And then they fail to provide a single reference to back up the vast majority of those statements.

There's a comment in the files in one of Wessely's letters where he objects to ME and CFS being listed separately. I've scanned through the whole of this file, and the abiding impression I get from it all is that a large amount of campaigning and lobbying and discussion goes on, and considerable progress is made in redrafting the guidelines, then Wessely and Professor Thomas come in at the end and wipe it all out.

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This has happened repeatedly over the history of this illness and the campaigning that has gone on about it.
It is why many PWME are so suspicious of the motives of those in power. Because their motives cannot be due to ignorance of the illness, but policy.

It is difficult to make this point clear to younger people on this forum who have not lived through these experiences of (almost) getting the necessary changes through the legislating bodies and then having them overturned yet again.

It is like some prolonged game where we are being led round in a circle by those in power, - always thinking progress is just ahead. I have become very cynical having seen how this policy works (for policy I believe it is.)

A leading medical figure in this field who had experience of this told me the politics in this field are massive.

After all, our governments in Britain and the US are not going to openly admit to the populace that they are going to take no action to help those with certain illnesses.
They would not explain their motives to us.

So they play this game of pretending to be "confused" by the "complexity" of ME, being "unable" to understand it, but at the same time holding out "hope of progress" whilst simultaneously ensuring that the research they control the funding of cannot possibly reveal any biomedical basis for this illness.

This has gone on now for thirty years, the years of my illness, and believe me they can keep this up indefinitely.

Meanwhile, under this stress the ME sufferers blame their own representatives for this failure, a failure they are not responsible for. I am glad that Charles Shepherd's work has been revealed in these papers. I hope it will halt some of the criticism of him that goes around the web.

That is what it is to have POWER. They make the rules and the definitions.

On page 18, Wessely argues against "CFS/ME" being categorized as neurological:

Okay, I guess I'm totally screwed now, by his reasoning ... but in the beginning, my first symptom (after a nasty flu), was calf pain when walking. Which I assumed was from being at home with the flu for a couple weeks. So I kept pushing myself, with the assumption that the muscle pain would stop once my muscles built up again. And the pain kept getting worse and other symptoms (PEM) became much more prominent. And that was long before I heard of ME or had any idea what was going on.

I also find it interesting how many absolute statements the psychs make. They almost never mention if something is even controversial - they simply state their view as if it is incontrovertible fact that has been proven over and over and cannot be doubted by any sane and rational person. And then they fail to provide a single reference to back up the vast majority of those statements.

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I agree with you Valentijn. I had major problems many years before I even recognized I had problems, and even more year before I was diagnosed.

Making strong statements is not unscientific, but with one important caveat. It should always be clear that what these statements refer to - hypotheses, models, evidence, possibilities, probabilities and so on.

For example I, I think it is very probable that Rituximab will be considerably more effective if used in combination therapies, including antioxidants. Thats a fairly strong statement, but it says "I" which tells you it might be opinion not fact, and it uses "probable" which tells you its an estimate or hypothesis. Presenting unproven hypotheses as fact is a hallmark of pseudoscience. Using emotive rhetoric not analytical reason to promote those unproven hypotheses is another marker for pseudoscience. Ingoring contrary evidence wholesale is indicative of pseudoscience, but can also indicate dogmatic thinking (especially dogmatic verificationism as I have said elsewhere).

I am happy to use the word psychobabble. Firstly, it appears in the peer reviewed medical literature. Secondly, it gives a label to unscientific psychiatric research and practices that differentiate it from mainstream psychiatric research. One of the features of pseudoscience is that it likes to make itself look mainstream. Anyone who does not look closely might not realize how far off the path of reason it is.

This has happened repeatedly over the history of this illness and the campaigning that has gone on about it.
It is why many PWME are so suspicious of the motives of those in power. Because their motives cannot be due to ignorance of the illness, but policy.

It is difficult to make this point clear to younger people on this forum who have not lived through these experiences of (almost) getting the necessary changes through the legislating bodies and then having them overturned yet again.

It is like some prolonged game where we are being led round in a circle by those in power, - always thinking progress is just ahead. I have become very cynical having seen how this policy works (for policy I believe it is.)

A leading medical figure in this field who had experience of this told me the politics in this field are massive.

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Hi currer, I think this is both correct and wrong in particular ways. I agree a lot of this is to do with policy (and agendas). I also think that organizations with such agendas take advantage of wholesale ignorance of the issues. Because people do not know better they can be spun any kind of nonsense as long as it sounds reasonable and comes from an authority figure. That is one of the reasons why I would really like to see a global press release website for ME and other neuroimmune disease. Many people are, in my opinion, simply ignorant. They are vulnerable to that because the information systems that should inform them (including media) are failing in that task.

We cannot easily change the direction of those who are committed to a policy or agenda against our interests. We can however reach many of the people who they influence to achieve their goals. This is not a war in a conventional sense, but its very much a cold war. Each side gains or loses power by virtue of how many reasonable but uncommitted people they can influence.

There's a comment in the files in one of Wessely's letters where he objects to ME and CFS being listed separately. I've scanned through the whole of this file, and the abiding impression I get from it all is that a large amount of campaigning and lobbying and discussion goes on, and considerable progress is made in redrafting the guidelines, then Wessely and Professor Thomas come in at the end and wipe it all out.

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It was always my impression that lobbying by the charities attempted to keep ME as Encephalomyelitis and 'both' medical and psychological authorities demanded scientific or indeed clinical evidence.

There were several key meetings that led up to the formation and publication of the NICE Guidelines in 2007 when a compromise was the best that could be reached, else we would have 'CFS' with no recognition of 'ME' at all. But even the lobbying that is being viewed as 'positive' and even successful now - i.e. prior to the Guidelines and the Chief Medical Officers publication in (I think) 2003/02 - patients were finding it incredibly difficult to get doctors and consultants to accept they had 'Encephalomyelitis' i.e. the inflammation that warranted a distinct neurological condition.

What has happened since these meetings and publications - especially NICE - in the UK is a stand-off I suppose. If patients push for the diagnosis Encephalomyelitis they are still met with disbelief that inflammation is a key factor. And it makes little difference in at least one respect - namely treatment options - they remain the same regardless.

Because people do not know better they can be spun any kind of nonsense as long as it sounds reasonable and comes from an authority figure. That is one of the reasons why I would really like to see a global press release website for ME and other neuroimmune disease. Many people are, in my opinion, simply ignorant. They are vulnerable to that because the information systems that should inform them (including media) are failing in that task./quote]

Hi currer, when I first thought about this I was thinking about a real organization, created and funded by a coalition of many disease advocacy groups, including GWS, MS and any others who might want to be interested.

I am now thinking more about a distributed model, less centralized, though with a central website. Essentially we/someone proposes establishing a central but independent website for global localization of opinion and press releases. We then invite everyone we think should be involved to sign up. There is some risk that needs to be discussed that contrary groups might join in order to unduly influence the process. I think censorhip should be minimal, but it should definitely be moderated using a very open moderation process. I think there should be options for open commentary on all press releases however, though to establish credibility I would suggest people be encouraged to give their real names. This is for high level advocacy, not a patient forum, and so credibility is a major issue.

The idea is to have every press release from every signatory body placed on this site, as well as the site of the original organization. We can then promote it as a one stop site to the media. In addition comprehensive FAQs, glossaries and other resources should be available, plus links to other leading sites for information. Critical documents like disease definitions and the IACFSME Primer should also be linked to this site, though not necessarily on this site.

These ideas are still new. This is an initial discussion period. There is no fundamental reason why this cannot be done. How it is done will however have an impact on the outcome, on how effective it will be.

Currently we have how many patient organizations including advocacy groups? And researchers and research organizations? How about if they could all post important concepts on one site? How much of an increased impact will that message have? At some point this is going to need its own thread.

Dr Shepherd - for the record, the Freedom of Information request to which you refer above was made by me. I used the procedure set out in the Freedom of Information Act 2000.

I am still in the process of appealing the redactions. This is the only way in which such a file can be released.

I became aware of this file a couple of years ago. I started the process in September 2011; lodged the necessary appeals in due course and eventually received notification that most of the file would be made available to the public.

That notification was dated 4 April 2012 and stated that the file would be ready on or before 17 April 2012. You will see that the opening date is actually 10 April 2012 although I was unable to view and photograph it until 30 May 2012....

....The reason I have not written anything earlier is because my appeals regarding the redactions are still outstanding and my own health has been very poor in recent months. It is hard to read/write anything.

I also have an appeal outstanding against the redactions in The National Archives (TNA) file FD 23/4553 - the "secret" MRC file.

The main file is available online on the TNA website (and, from memory, has been since 2007) but - again - with significant portions removed...

...And finally (having again pressed the return key prematurely!) - I applaud the work being done by the Countess of Mar and the MEA.

However, while Parliamentary Questions and e-petitions contribute significantly to awareness-raising, the TNA file has been opened up via the FOIA request, not through any other method.

Thank you so much to everyone who has commented/messaged me regarding my posts on the release of the secret ME Files at The National Archives (see link below). I have tried to respond to everyone and will continue to do so.
I am feeling somewhat overwhelmed and exhausted by the events of the last 36 hours (as I hadn't quite planned it this way) and I need to slow down a little. I also have an ongoing plumbing crisis which requires my urgent attention on Monday morning :-(
I will continue to check FB regularly as I always do and hope to keep in touch with all of you as far as I am able.
I send my best wishes to all fellow ME/CFS sufferers, our families, friends, carers and all those who continue to believe in and support us. Thank you.

'In the rolling hills of Northern Maryland in the County of Frederick was a sprawling US Army base that became during WW2 and the subsequent Cold War years the main centre for US Biological Warfare research. Fort Detrick was America's premiere laboratory for the development of Biological Warfare agents and their defence. Even though Fort Detrick was to be mainly decommissioned and turned into a cancer research facility administered by the National Institutes of Health by the passage of President Nixon's Plowshare Act, the military activities remained relatively untouched at the US Army's Institute for Infectious Diseases headquartered at Fort Detrick. Although the classified part of Fort Detrick where Biological Warfare research has continued to this day was much smaller than in its Cold War heyday, it remained a potent force in a secret war to develop and test new biological agents under the guise of Biological Warfare Defence. It was here and in hundreds of other laboratories throughout America that immediately after WW2 our former enemies' scientists were brought in under Operation Paperclip to continue their research and development of some of the most horrible weapons of mass destruction known to mankind.'

'.....a sinister group of rogue scientists, physicians, bureaucrats and government administrators with extremist and inhuman attitudes existed and were camouflaged with the academic, military, veterans' and intelligence organisations in the US and abroad. This well-organised faction, steeped in Cold War philosophies and backed financially by organised crime and global syndicate special interests, has operated and continues to operate within our midst while arrogantly ignoring the basic dictates of human rights and dignity. They continue to conduct their reckless experiments to test biological weapons and other weapons of mass destruction on an unwitting public and Armed Forces personnel using incredibly underhanded and amoral tactics and strategies. This group has not been held accountable, nor have they accepted responsibility for their heinous acts against mankind that span decades of abusive conduct since WW2.

Unfortunately, the professional organisations of scientists and physicians around the world have done little to identify and stop this rogue group and have for the most part been too intimidated or apathetic to assist Congress and the Executive Branch of the US government and other governments around the world to stop this form of insidious scientific medical terrorism. We consider this to be one of the greatest betrayals ever perpetuated on the people and the governments of the world.'

The pattern of denial and sabotage of GWS from government officials and some scientists (in UK and America) is strikingly similar to that observed in CFS. Wessely has been prominently involved in the denial of both. Curious for sure, but more evidence is needed. You won't find it in any government ME files either.

During the BUsh II Regime (won't dignify it with callign it an "Administration", ick), they massively expanded the USA's biowarfare research system.
Now, it's sensible to have a modicum of defence research on such, but it's well know that the more labs you have, more risk of accident so quite quickly you end up more at risk from your own labs than an enemy!
and also, for defence you don't actually need that many labs
So the USA's massive expansion sent off alarm bells with even NATO partners publicly noting that such expansion cannot be explained by the need for "defencive" research ie, even to allies, that was obviously a bloody offensive weapon research expansion.http://truth-out.org/index.php?opti...:biological-weapons-bargaining-with-the-devil

Between 2002 and 2009, approximately 400 facilities and 15,000 people were handling biological weapons agents in sites throughout the country, in many cases unbeknownst to the local community. The marathon to spend nearly $60 billion since 2002 on biological weapons research has raised serious concerns for numerous scientists and informed public critics. Among these are:

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During the Rhodesia era, there was a massive increase in anthrax cases, vastly higher than the norm, pretty obvious that the Rhodesians were using anthrax as a bioweapon against the insurgents.
And then go investigate the links that had to the USA especially after Rhodesia fell....and then to the terorrist anthrax attacks in USA....
Mmmmmmm....
Personally I believe that "they" want anthrax to eradicate "troublesome people". Insurgency wouldn't be an issue if you could just "sterlize" large areas of "uneeded Humans". After all, all they want, are the resources, oil, rare earths etc, not the people.
That was the real nazi goal of "Liebensraum" as well, they couldn't get at the colonial resources France and britian ahd grabbed, so they planned to take voer Eastern Europe/Russia and completely extermiante all the "Slavic" peoples, from Poland to Siberia, about 250 million people

Military got out of such foul weapons because, from a military stand point, they aren't much use.
Nuclear biological and chemical wepaons are best against civilians, not military
they are too expensive and dangerous to store, far far less cost effective than modern "smart" munitions.
For example the "skeet" tank killer cluster bomb does the same job as a "neutron bomb" but at a fraction of the cost and no worries on radioactivity or triggering a nuclear war
So, the military do not need and do not want Weapons of Mass Destruction (that is, true WMD, not car bombs or other idiocy some twerps want classed as WMD, jeesh)

But, if you are an ammoral SOB who wants to grab other nation's resoruces or, exterminate your own populations "rebels"
Another issue is the methodology/idealogy of NATO vs Warsaw pact WMD
Simplistically, NATO wanted ability to destroy an enemies economic or effective ability to do things where as Warsaw pact just wanted to kill
This meant US/UK spent more time researching disabling, sickening agents, crop blights and so on, than mere mass murder tools.
The problem with that is obvious though....see Lyme Disease.

And of course you had the whole massive system of propaganda and mass manipulation BOTH sides had during COld War. Uk was sick with secrecy, only Albania and North Korea were worse.
CIA murdered a high ranking US officer to prevent him exposing the vile tests they had been doinghttp://en.wikipedia.org/wiki/Frank_Olson
Those systems slowly blended with corporate/government DESIRES/interests after end of COld War.

Psychological warfare is a much greater threat than nukes, as sane folk don't use nukes, but riled up mad and ineptly led folk, do....

Thus, all the tools were at hand to "bury" the reality of Myalgic Encephalomyelitis, and Gulf War Syndrome and others.
Combined with the idiocy of the bureacratic mind/systems (blind moles only seeing their own burrow ahead, pushing their excrement on those behind...as Alex has noted they only care about THEIR bailiwick and to hell with consequences outside)

The populace is stupified with cheap drugs, legal and illegal, hell it pays in many ways to allow and control, to villify the illegal drug trade. ou get an udnerclass to revile and scare the voters, slaves ot use in concentration camps and a greta way to bank roill your "black ops"
And populace stupified with idiot TV and controlled media
"Big Brother" is NOT some Soviet horror, they couldn't organize a p**s up in a brewery compared ot the web of self serving interests needed ot build the blanket of stiffling excrement that enfolds so called Western Democracy :/

msot people cannot see such, they laugh at such, because they are small minded, frightened, stupid, because they do not have the courage to put their head above the parapet and look and think for themselves.

I do not note UFO issue becuase I'm crazy, but because it's perfect example of all this, look at how the media always makes a joke of such...so average person will always regard such as a joke and be afraid to ever support it in case they themselves are laughed at, one of the absolute msot feared things we Humans have in our psyches.
This is know, this is deliberate social engineering
And who the hell do folk think comes up with such psychological warfare manipulation?
Why, unethical psychologists and psychiatrists working for the Ministry of Defence and Department of Defence (and Russian, Chinese etc counterparts)

I'm sorry but your children, grandchilden may well suffer damage from organophosphates, and other related chemicals form crop sprays to plastic bottles, and our system will lie out it's ass to cover that up, as they have done with depleted urnaium, asbestos, coal dust and other issues going way back.
Vaccines could be horrendous slaughter ansd they'd still cover that up, $50 billion a year profit and ways to target mark and maim if they ever need to
see Paksitani doctor CIA used to pinpoint Bin laden, ya all think that was a coincidence that they had such ability and misued a doctor that way, hm? if you wish to economically ruin an ecnomic enemy, say US vs China, how do you think they'd spread disabling diseases?

Global Warming will trigger apocalyptic conflicts where your governemnt will tell you one day "We either get rid of all these brown/moslem/hindu/christian or whatever people, or they will take all your food!", and they will just coincidentally happen to have just the right kind of short lived anthrax, in huge amounts, to do so.
And so on, and so forth.
.
Doesn't take some mythical Illuminati, just many self serving assholes, blinkered bastards, backs being scratched in a web, a tsunami in fact, of suicidal idiocy, and a populace too gutless, to besotted with "the opiate of consumerism" that they won't do anything.

ME raises too many questions, threatens the authority, the imperial might the government demands...so, it goes away...
And anyone who doubts that, go read up on Camelford, they were quite happy to let thousands perish from a particularly horrible death, rather than merely admit it and provide treatment, and covered that up to this very day, denying Public Inquiries by BOTH major politicla parties
And WHO published another bit of "flim flam dont' look at the little man behind the curtain" propaganda to hide that atrocity? Oh would happen to be Weasel #1, would it?
And who also does the Weasel #1 work for, why the Ministry of Defence!

First they came for the communists,
and I didn't speak out because I wasn't a communist.
Then they came for the trade unionists
and I didn't speak out because I wasn't a trade unionist.
Then they came for the Jews,
and I didn't speak out because I wasn't a Jew.
Then they came for me,
and there was no one left to speak out for me.

Currer,
*nods*
and the eventual end goal is obvious, but again, folk will nto see until they are dragged through the horror themselves.
I have no sympathy for such scum, they should be be rotting in jail.

sorry for large image, but folk need a massive wake up call
Corproations and the ideagogy behind them are the very Devil itself
Stalin was a freakin' 2nd rater by comparison :/